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Friday, 5 July 2013

Glastonbury Gas Gas Gas! Part 2

Friday morning dawned cloudy but dry. After just a few hours sleep, adrenaline made sure I woke zinging and popping with excitement. I would be speaking on a stage at Glastonbury in less than two hours! The camper van was cosy - it even had a fridge, but we hadn't worked out how to do tea yet and a spoonie with no tea (well this spoonie) is like Cameron without his botox - just a facade.

The green room, a huge white marquee with red carpet, elegant drapes of red curtain and twinkly fairy lights was just across a bit of muddy field, so Dave and I set off nervously to hunt beverages. As we stepped out of the van, we practically fell over Tom Watson and a friend trying to put a tent up. I've met Tom a few times and he's always been lovely, but somehow, grappling with tent pegs is a great leveller. We traded tent-banter with the comparative smugness of those sleeping several inches off the floor and carried on towards the promise of tea. (Half an hour later, as we returned to the van, very little tent progress had been made and instructions had finally been resorted to!)

Inside the green room, there was indeed free tea, coffee, juice and fruit. The tables were strewn with packs of cards and chess boards for whiling away the hours between appearances. Owen Jones was sitting outside and a few journalists were hopping from guest to guest interviewing panellists and musicians. Caroline Lucas came and sat with us for a while as I puffed nervously on a last minute cigarette. As though it was the most normal thing in the world, I suddenly found myself hugged by Billy Bragg. Billy Bragg!! A hero of mine for so many years.

Before I knew it, we were negotiating the cables and boxes backstage to emerge into the Leftfield audience. One of the backstage guys rushed to get me a box so that I could get onto the stage and the comfy leather sofas waiting for us.

The subject of the debate was "Austerity" and Owen kicked off with his usual brand of passionate, evidence based opposition. John Robb, punk hero, was chairing as John Humphreys had been held up in London covering Mandela. Tom Watson went next. Poor Tom had the trickiest job. He tried valiantly to walk a party line whilst still opposing the Tory horrors ripping the country apart, but he seemed weary, unconvinced himself. As the audience and panellists alike urged more emphatic opposition from Labour, Tom stuck to the cautious party line, but somehow I felt, with little conviction.

As my turn came to speak, I asked the audience to think for a moment about a group of people who are not allowed to use the front doors of 5 star hotels, but are made to use the tradesman's entrance. A group who may not eat in the same restaurants as them or travel on the same transport. Children who may not attend the same schools as theirs or enjoy the same theatres or cinemas. No, I wasn't talking about race segregation in 1950s Alabama but the lives of sick and disabled people in the 21st century, right here in the UK, right now. I asked them to look around the tent. How many wheelchairs or guide dogs did they see? How many had they seen elsewhere on the vast site? I warned them that they would see fewer and fewer as the government's austerity bit harder. That austerity was very real for some. Sick and disabled people would increasingly find themselves stuck within four walls, their only incomes stripped away. Who can attend Glastonbury if their only means of transport is taken away? Who could afford the tickets if just putting food on the table becomes an impossible challenge? Finally, I begged them to open their eyes and see what was being done in their name and if it sickened them, to DO something about it. Very British tutting would not be enough.

I got a resounding round of applause and took my first breath for about half an hour. The debate fizzed along nicely, with Tom Watson and Caroline Lucas arguing over how firmly Labour should oppose austerity and Owen chipping in with eye-watering stats and research. We took questions from the floor and most of them lamented the lack of a credible opposition when we need it so desperately. However, this was Glastonbury, not Westminster and one might expect the audience (particularly one who chose Leftfield over beer and beats) to be to the left of even a distinctly leftie panel.

After taking questions from the floor, it was all over, the quickest hour or so of my life. Audience members mobbed us at the end to share congratulations or advice and Dave pushed his way through with my wheelchair to lead me away. (Incidentally, as we made our way back to the van, Tom's tent still wasn't fully up....)

I was buzzing with adrenaline and ravenously hungry - I hadn't dared eat before the debate in case the ghost of crohn's present reared it's head, making me vomit all over the audience. It was gone 4pm, the sun was peeking out from ever smaller clouds and beats from every stage took over heartbeats with their intensity. I squealed at Dave "Let's find some fun!!!!"

We decided alcohol was a necessity and Dave went back to the van to get me Pimms (I'd bought cucumber and a mint plant with me - I really don't do slumming it) I asked him to "park" me just outside Leftfield stage so that I could watch the kaleidoscope of humanity milling past. I love people watching anywhere but this was a whole new level. Wild outfits, incongruous hats, hair every colour of the rainbow, Grandmas and babies, Dad's in anoraks and self-conscious teens, too cool, yet not quite cool enough. As I sat in the sun, making a "cigarette" Billy Bragg marched towards me, all smiles and hugs. Had I had fun? Did I enjoy the debate? Still buzzing, I said it was wonderful and such an opportunity to reach a new audience. We chatted for a while, then he asked if I'd like to speak again the next day, this time on a panel with union leaders and Ricky Tomlinson. Thrilled, I said I'd love to and he strode of to his next session.

Dave soon came back with a carrier bag stuffed with Pimms and lemonade, beer and a real glass with slices of cucumber and scrunched up mint - he knows me so well. People smiled as we pushed our way through crowds, my grown-up drink spilling here and there over bumpy walkways.

We decided not to have a "plan" but just to meander from stage to stage and see whatever was on. It was surprisingly easy to get around in the wheelchair as walkways had been levelled with miles and miles of makeshift flooring. We trundled towards the Other Stage and Dave wheeled me up a ramp to the viewing platform.

I'd never been to this kind of event in a wheelchair before, but far from feeling like defeat, it felt like liberation!! We weren't restricted by how far I could shuffle on foot, there were no tears as I found I couldn't get back from a distant field. We didn't have to find somewhere I could sit amongst boisterous crowds when it all got too much. Every stage we approached had a viewing platform with a ramp and we simply rolled up onto them! They were close enough to have a decent view and there was always space and a friendly security person to help.

But the best thing about the whole weekend for me - I'm not kidding - were the sign language interpreters signing the lyrics of the songs. On every viewing platform, they danced joyously, wrapped up in the music, the signing gave their dance so much more power, as though every bit of them went into the song. I filled up with tears as they signed for a guy in a wheelchair who had totally lost himself in the music. He may not have been able to hear what I heard, but these interpreters danced just for him, and he thrashed his head in time to the beats, hair whipping back and forth. It was beautiful to watch.

We managed three stages in as many hours - I'm fairly certain even those with no impairments would have struggled to see so much. Don't ask me who we saw - they were all lovely. I did get the name of one band, the Dub Pistols on the BBC introducing stage. LOVED them.

We meandered around in the sunshine, ate some thai curry noodles (they were delicious, none of your crappy food stand nightmares at Glastonbury) drank, smoked and were merry.

It's worth pointing out at this point that us spoonies could show the youth of today a thing or two about holding their drugs. On most viewing platforms I'd guarantee our prescription meds outranked their rather more illegal ones. Add in a pint or two, and they were lurching around the place with an unseemly lack of tolerance, while us wheelies and spoonies looked on knowingly, perfectly cogent on our morphine-and-gin or tramadol-and-beer.

Billy Bragg was playing his own set on the Leftfield stage at 9pm, so we set of through the endless crowds to get in place. Unfotunately, the stewards often turned out to be a little TOO helpful and in an attempt to show us shortcuts, often sent us in endless circles only to end up in completely the wrong field.

We got a little lost and I got a little crankly as my energy-spoons dipped. We finally got back, but I needed tea and a little rest, so we came in the back gate to the backstage area and the sanctuary of the green room. As Billy smashed out tunes to a thrilled audience that reached right back to the food stalls, the energy started to infect me. I started to revive, but the thought of fighting our way around to the front stage and the viewing platform wasn't so appealing. We asked the stage guy what our best chance of making it were and he smiled and said we could watch from backstage if we liked!!! I've never been backstage anywhere before, it was so exciting! There I was, just a few feet from Billy Bragg as he smashed out songs I'd known for most of my life. I turned around to find Phil Jupitus (turns out he's a mate of Billy's) singing along loudly in my right ear as Ranking Roger from the Beat strolled past outside. Get me!! Little old spoonie me who spent most of last year in bed, pleased just to be able to get to the loo!

I felt happy! Actually happy. Filled with joy and fun, I buzzed and managed a kind of wheelie-dance from my chair. I couldn't remember the last time I'd had fun, just plain old fun and it felt amazing....

Yay!!! The mint plant will have stories to tell its garden-bound mates. "I've been to Glastonbury, you know, and hardly any of me got eaten, although a few of my leaves may have been smoked by over-enthusiastic passers-by." (Sorry, is my imagination taking over??)

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About Me

I have a rare form of Crohn's Disease. I was diagnosed 21 years ago and have had many operations to remove strictures (narrowings in my bowel that grow like tumours) I suffer daily pain, often vomiting, malnourished and weak. I take mega-strong medications every day including chemo-style immuno-suppressants, opiates and anti-sickness injections. Sometimes I am fed into my central vein by tube, other times I can enjoy a nice meal out. I have children that I often can't look after and a husband who often looks after me.
Our lives are disrupted daily by the misery of a chronic condition.